Cannabis

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Stainless
Posts: 156
Joined: Tue Dec 01, 2015 9:30 pm

Re: Cannabis

Postby Stainless » Tue Dec 10, 2019 5:48 pm

I know how you feel. Last time my neurologist said "we are getting into the MM business". I hesitated to try, because I have used it recreationally and that does not help or hurt RLS. Since I live in a state it is still illegal, I don't know the THC/CBD content. I have an appointment in a couple of days and am going to bring it up and give it a try. This doctor said he treats RLS with THC, so at a minimum I'll catch a buzz.

QyX
Posts: 619
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Fri Dec 20, 2019 12:18 pm

There is a new (small) study out.

Title:
More evidence of cannabis efficacy in restless legs syndrome


Abstract

Restless legs syndrome (RLS) is one of the most disabling and sometimes painful sensorimotor ailment of the nervous system that has only in recent years become more widely accepted as a clinical disorder with its own distinct features. Usually, symptoms respond well to dopamine agonists, anticonvulsants, or opiates, but still a subset of patients remains refractory to medical therapy and/or reports serious side effects. Recently, patients’ statement of a remarkable and total remission of RLS symptoms following cannabis use has been reported. Here, we confirm and extend these findings to more patients with RLS. The antinociceptive effect of marijuana has been documented in many painful neurological conditions, and the potential benefit of cannabis use in patients with refractory RLS should therefore be questioned by robust clinical trials.


I think this is very good news for us!

This gives us new updated evidence to pressure our doctors who reject using medical marijuana (MM) for the treatment of RLS. Additionally, this increases the likelihood of additionally studies in the coming months and years.

I think I will send the author an email in the new year. Maybe he is interested in a conversation and I can squeeze some new information out of him.

Unfortunately I now ran into the situation where my "official" doctor, the one who can prescribe medication via insurance is suddenly refusing to write prescriptions for cannabis flowers, even if my insurance would agree to cover the costs.

I really don't understand the change of heart after I was told two times by her that she is going to continue the treatment of my private cannabis specialist. But suddenly she tells me she lacks the experience to prescribe cannabis flowers. She will prescribe Sativex and CBD-Oil but not the flowers. And this I got told via email, one week after I had an appointment where she told me in person that she is going to prescribe cannabis flowers.

I have not yet decided with how to deal with this situation but finding another doctor will be incredibly difficult due to the opioid treatment I need. So I think for the time I have to cover the coasts myself, even though MM is ridiculously expensive in Germany (about 22 EUR per 1 Gram).

That's also the reason why so many legitimate patients are forced to use the black market or grow cannabis themselves.

Germany has such a wonderful health care systems and the new medical marijuana laws in Germany were made with the intentions that patients now have legal access to MM. But it really doesn't make a difference when you can't afford private prescriptions or don't have a doctor who is willing to write prescriptions via insurance. And there is honestly not much a patient can do except seeing 20 different doctors in the hope that one of them has empathy and is willing to help you.

Stainless
Posts: 156
Joined: Tue Dec 01, 2015 9:30 pm

Re: Cannabis

Postby Stainless » Sat Dec 21, 2019 6:42 pm

In Florida MM was forced on the legislature by a voter driven constitutional amendment. That's about the only way anything is accomplished here except selling out to the developers and polluters. The legislature passed a law that only Epilepsy, Glaucoma, Cancer, Immune Deficiency, Lateral Sclerosis, Crohn's disease, Parkinson's and MS can be treated but apparently doctors are willing to prescribe off label or stretch the requirements. It requires seeing the neurologist 2 more times a year not covered by insurance (in addition to 4 times I see him under insurance now). I'm not sure if Obamacare covers any of the MM itself or what's available at the MM provider. Does anyone know more about MM in Florida?

Rustsmith
Moderator
Posts: 4412
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Cannabis

Postby Rustsmith » Sat Dec 21, 2019 8:41 pm

I don't know anything about MM in Florida, just Colorado. But I can emphatically say that Obamacare will NOT cover MM anywhere in the US until Congress changes the laws. Marijuana, medical or recreational, is still a Schedule I drug by federal law and is therefore just as illegal as heroin and meth. The reason why your insurance will not cover the two MM visits to your neurologist is due to this classification. In Colorado, we have to pay cash for our annual MM doctor visit as well as for the state license fee.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Stainless
Posts: 156
Joined: Tue Dec 01, 2015 9:30 pm

Re: Cannabis

Postby Stainless » Sun Dec 22, 2019 3:14 pm

Thanks Rustsmith for the explanation of how federal law comes into play. Even our little city has decided not to enforce possession but that does not change the law. At least in Co. you just walk down the street to a legal vendor and buy whatever you want? Don't see that happening here soon.

Rustsmith
Moderator
Posts: 4412
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Cannabis

Postby Rustsmith » Sun Dec 22, 2019 5:47 pm

In Colorado, there are two types of licensed vendors, medical and recreational. Products sold by medical vendors are exempt from most of the taxes and you can buy more product at higher strength. Recreational vendors are taxes sort of like booze and tobacco and there are limits on how much you can buy (and posses) at any one time. Of course, there is nothing to stop you from driving from store to store loading up on products, unless you get caught.

It is still not legal to consume in public, except that there are a few clubs that are starting to get licensed to do business. Some are being set up as nice restaurants where the match the weed to the course of your meal, sort of like with wine.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 619
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Thu Dec 26, 2019 10:27 pm

Early december I started taking iron tablets together with folic acid. A blood test had revealed my low folic acid levels over a year ago but I was somewhat negligent with treating it. Additionally I even started taking Melatonin again since it has helped me a lot in the past but RLS symptoms forced me to stop taking it.

However: now with a much improvement "brain chemistry" due to medical Marijuana I seem to be able to tolerate it again. And not only this: I also tolerate caffeine, alcohol and nicotine again. (I normally don't smoke but part of my family does and I tend to have short relapses around Christmas when I travel home, however I only vape and don't do cigarettes and about alcohol: I don't drink all year but around Christmas and New Year .. it can become difficult to avoid and as long as I tolerate it somewhat, I still drink a bit)

But it is not only that my brain seems to react more "normal" again ... I've also been able to sleep EVERY night in the past 3 weeks. I now found a Cannabis strain (Ghost Train Haze, roughly 22% THC, 80% sativa and 20% indica genetic) that seems to work more like a hypnotic than anything else. I've had days where I still was quite active, even hyperactive late in the evening where I thought there is no way I will be able to sleep ... but then I used GTH and so far it was always able to turn me around completely and make me sleep reliantly.

And it really feels like that there is so much more going on than just being able to sleep. It seems like I am going backwards in time and my RLS seems to improve from week to week, especially the last two months have been quite spectacular. I improved up to a point where I am able to travel again and make plans for the next week. Even more interesting: while my main problem was always insomnia, I sometimes have episodes of hypersomnia and those have disappeared, too. When I sleep, I now sleep between 6 and 8 hours. If I wake up earlier, a small dose of Marijuana is enough to get me back to sleep.

My biggest concern is now the availability of Ghost Train Haze. While I can get other strains to work, too ... nothing performs as good and as reliable as Ghost Train Haze but since demand for medical Marijuana in Germany is so much higher than the availability, many strains are often not available all the time (and I am already using 4 different pharmacies to obtain my Cannabis).

Ultimately, the important thing is that there really seems to be a solution for my RLS and when all this is going to continue, I am optimistic that I really will be able to continue and finish medical school. That would be absolutely remarkable. What seem absolutely impossible only 3 months ago now starts to feel like a realistic outcome of events.

Personally, I hope this motivates other people to keep trying and look for solutions for their RLS issues. To me it starts to feel like that there are indeed plenty of options and things we can try but our doctors are often not willing or misinformed. Medical Marijuana has done so much more for me than I ever though would be possible. It outperformed my expectations in every aspect and it seems to get better and better the longer I use it.

My Oxcarbazepine dose is now at a stable 600 mg, down from 1.500 mg before I started using Cannabis and opioids perform better than they ever have. If I had to estimate, my baseline symptoms have reduced by about 50%. I simply feel so much more normal now. At times it is hard to believe by how much I have improved.

I can't really determine how big the impact of Melatonin, folic acid and iron tablets are but at least it feels like that every little change played its part.

However this doesn't mean I will give up on seeking the iron infusion. Now I really want to see how much my health can improve. For example it would be really nice to be able to sleep within 90 minutes after vaping Marijuana because sometimes the hole process can take up to 3 hours.

But still, being able to sleep every day still feels so magic and bizarre to someone who was used to only being able to sleep every 2nd day.

Never give up hope. If my story proves anything, it shows that even (almost) hopeless and severe cases can be treated successfully.

Polar Bear
Moderator
Posts: 7726
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Cannabis

Postby Polar Bear » Sat Dec 28, 2019 4:22 pm

QyX - I see so much hope and positivity in your post. Congratulations on your determination and getting to a better place with your rls symptoms and sleep.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 15913
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Cannabis

Postby ViewsAskew » Sat Dec 28, 2019 10:46 pm

Great news!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 619
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Thu Jan 09, 2020 6:02 pm

Surprise, surprise: I am still stable, who would have thought, right?

And even better: while it is still only basic, some form of self-regulation came back and I don't need to force myself into sleep with meds all the time because at least sometimes I get tired in an almost natural way. And when I had nights where I slept longer and wake up early, I am still almost able to sleep the next night, too. Of course, I then don't sleep as much as I do on an average day but when I slept long one day, I am still okay the next day when I only slept 4 hours.

Unfortunately the cannabis strains I need the most are currently not available anywhere in Germany. At the very minimum I have to wait at least another month before Ghost Train Haze, L.A. Confidential and White Widdow become available again. And I don't have anything left of those strains either.

So for this month I have to use Jack Herer and Crimea Blue. Those two strains are not nearly as reliable as Ghost Train Haze but maybe, just maybe things will work out okay since Jack Herer has some Haze genetics, too ....

Now we will see how much my health has really improved. In general I expect that I won't be able to keep the almost normal day-night rhythm I currently have but as long as I am still able to sleep somewhat regularly, I will be able to survive this month.

For the future I simply have to build a stash and use the really valuable strains as little as possible and use one of those strains who are always available as a main strain for THC delivery and then the really good stuff only right before I am about to go sleep.

I am not fully grasping yet what has happened with me in the past 2 months but the improvements are so remarkable, it sometimes feels completely insane that all of this was possible with Marijuana, especially considering how much trouble I had with THC initially.

I never never never ever would have thought that it is possible that Cannabis can improve my health in such a dramatic fashion and even more surprising: that it was able to reverse the progress my RLS has made in the last 2-3 years back to a state where I tolerate caffeine and nicotine again.

Yesterday, I drank almost one liter of coke in the 2 hours before I went to bed and I still slept normally. When I compare this to the summer 2019, where a half glass of coke was able to cause severe RLS related pain, the current progress is just insane.

Currently, it even appears that Marijuana is more effective than opioids ... because I noticed, as long as I vape Cannabis, there doesn't really seem to be a need to take opioids. I can easily delay my main opioid dose in the evening by 4-5 hours as long as I vape enough. Too bad the cognitive side effects of THC set a limit of how much cannabis is good for me on each given day ... but still, cannabis just seems so perfect for RLS because it has the potential to treat all the core symptoms of RLS.


When I read posts like this from other patients, describing how great Cannabis can be for medical issues, I often thought that this is just propaganda and the people are exaggerating. But I now realise they were not. Cannabis actually can improve certain disorders and conditions in quite a dramatic fashion.

The recent days and weeks, I was as energetic and active like I was the last time 10 years ago, a time, where I had no idea that I was already suffering from RLS but at least was normal during most days.


This really really could be the big breakthrough I've been waiting for so long and it is quite possible that I will improve further after I got the iron infusion. But not sure when exactly this will happen.

Rustsmith
Moderator
Posts: 4412
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Cannabis

Postby Rustsmith » Thu Jan 09, 2020 7:11 pm

It is really,really wonderful to see how much you have improved, not just in the last two months but compared to where you were a couple of years ago. And it is encouraging for me to think that there is still hope that I can eventually find some similar sort of magic bullet that will resolve my various neurological problems.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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